Ella is 8. Caring for her is a team effort: Dressing, bathing, toileting, and transferring are some of the tasks Ella needs help with. Alongside this physical assistance, Ella, like every child, needs support with her mental and emotional growth, confidence-building, schoolwork, and character development.
Five Servings of Strength- a column by Michael Casten
Obtaining the right equipment for a child with a disability can be expensive. Yes, some insurance companies cover a lot of base medical needs, but many necessary modifications are not covered by those companies. Thankfully, the University of Illinois at Chicago has a program called the…
Ella takes great joy in slime. It’s the new craze these days. We sit at the kitchen table and pour glue into a bowl. We add other ingredients and before you know it we’ve made a squishy slimeball. She watches YouTube videos to get new ideas…
Kids with SMA have brittle bones, and Ella has had her share of breaking them. Just the other day she was sitting in her power wheelchair next to the coffee table. She was playing a game on her iPad. Her power wheelchair was “on,” and her…
Henry’s been in soccer for quite some time now, and he’s getting really good at it. He loves to play, attends practices willingly, and looks forward to games each week. Ava takes violin during school and after school. She practices almost every day in the living…
Siblings. Ella has two of them, both older: Ava (11) and Henry (9). They face all of the typical adventures that kids their age face such as school, friends, and screens. But one thing they have to work with that eludes their peers is having a…
A loud horn. Headlights and backlights. Hazard lights. Turn signals. Tilt features. Ella’s new wheelchair has arrived! We’ve been waiting for her new chair for one to two months now — and it’s finally here. It goes faster than her old chair…
Ella watches Henry go out with his friends. They start at one house and easily move to another while riding bikes, walking, or riding their scooters. Ella gets jealous. She wants to be able to go to a friend’s house and play, too.
School has started. Ella loves school. She’s one of those kids that adore playing school over the summer just to keep it alive for herself. She’s now in the third grade and loves it even more than last year. Because of…
Aug. 12, 2011. One day after our fifth wedding anniversary. Ella’s D-Day — diagnosis day. No treatment. No cure. At the time, we suspected SMA as Ella’s official diagnosis, but it wasn’t until Aug. 12 that we received…
